Joint pain

In the past I was diagnosed with Rheumatoid Arthritis then told I had fibromyalgia when I switched rheumatologist. I quit going to doctors and taking meds (hydroxychloroquine, enbrel and mythelprednosolone) and started crossfit which did help until I needed spinal fusion (bounce house not crossfit) which did help somewhat. I am now wondering if the joint pain may have been related to HS/APS?

Is joint pain something that can happen with HS/APS?



16 Replies

  • It's probably the most common symptom along with muscle aches.

  • Thank you!

  • The most common symptom is usually migraine but everyone is different.

  • I've never had a migraine but tbf you can find loads of excuses for joint pain, I know I did on the rare occasion I had it, until of course my knee disintegrated with no warning and now the second one is going, as a result I can barely stand and no longer walk. I currently have knee, back, elbow and hand pain.

  • Have you been properly evaluated to find out what is causing that? I don't think it's fair to put everything in the HS bracket. For instance I've got a trigger thumb which is probably osteoarthritis, tennis elbow, bursitis in elbow, shoulder and both hips and a degenaritive spine!! As yet there is nothing to link any of that to HS other than old age!

  • well the specialist at St Thomas' questioned the OA diagnosis last week he believes it's unlikely to be OA because of the sudden onset. Although I was told a year ago I needed an urgent knee replacement but I'm apparently too high a risk due to multiple strokes the last with an Inr of 4 so it seems they've gone back to square on in the evaluation process. All my joint pains came on suddenly and recently too.

  • I know my orthopedist told me a few years back that my knees appear to be older than me by about 20 years. My husband asked what could be done about that & the doctor said replacement but it would be years until needed. That was when I was 45. So I definitely know I do have some osteo-arthritis. Always fun!!

  • Hi Tucson, I had lots of jaw bone pain as initial symptom of APS. Turned out I had osteonecrosis of jaw bone secondary to ischemia caused by APS. I have also taken prednisone which, unfortunately, can also cause osteonecrosis. Some people end up needing joint replacements simply from taking prednisone. It's a 'double whammy' if you have APS and have also taken prednisone

    I didn't realize, though, that joint pain was such a common symptom of APS. I learn something new here every day.

    Keep fighting the good fight.


  • I am trying to learn as much as I can so I ask questions here. I never heard of APS until I was diagnosed in October 2016. I was just curious about the joint pain because I know how I feel on a daily basis. It's not fun.

  • Do you have migraines, balance issues, cognitive problems, any lacy rash?I note in a previous post you said you were dx with APS after a DVT - is this still the case? Just having joint or muscle pains is not an indication for Hughes Syndrome. There are other autoimmune conditions all of which could have joint pains. The fact you say you have been diagnosed with RA too however surely tells you where the pain may be coming from.

    I would go back to your Rheumatologist and ask for a proper review. Coming off of your medications was probably not a good idea and may be contributing to your pain.

  • It was over 4 years ago that I stopped seeing a rheumatologist for RA and/or fibromyalgia. i never felt like the 2'nd doctor was correct with the fibromyalgia diagnosis and she said no to the diagnosis if RA. The meds made me sick to my stomach. I didn't like taking meds for conditions I may not have truly had. So I turned to Exercise and a healthy diet. Even with diet and exercise I do have pain in knees and hips.

    I do get the headaches and that is not fun.

    I will speak to my hematologist at my next appointment about the joint pain see If he can recommend a good rheumatologist.

  • When I was diagnosed with APS after my DVT, heart attack, and PE. My joints have progressively gotten worse over the last 10 years. I was very active and had no joint issues until after I had my episode. Now my joints are getting worse. They say I have arthritis also fibro. People I have discussed with that also have APS have joint pain and muscle pains. Sometimes my hips hurt so bad I have a hard time going to sit down after walking to the recliner. Every day something hurts bad.

  • Have you had your Thyroid tested? Have you seen an orthopaedic specialist about your knees? Fibro can often be more thyroid related. Sjogrens can also be playing a part and not everyone tests positive to that but still has the clinical symptoms. Are you taking plaquenil? This can often help with these pains. Getting to the bottom of these issues is key in order to know how to treat them. Good physiotherapy, often private can also help.

  • That is exactly how my hips feel. I do find stretching and exercise does help somewhat. I do have awesome trainers who understand my limitations and give me modified movements.

    Woke with hip pain this morning went to the gym for a boot camp style workout and I feel less stiff.

  • I agree with APsnotFab that you should go back to a Rheumatologist and do ev a lot of bloodtests as it was a long time ago (4 years) you was properly evaluated.

    Best wishes from Kerstin in Stockholm

  • Thank you all for the feedback. My hematologist did a whole lot of blood work after my clot was discovered and redid blood work at my last visit. I know I do need to follow up on the joint pain so my task now is to find a good doctor. Unfortunately my experience with the last 2 rheumatologists weren't great.

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